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SM medication clinical trial

I took Oliver to the Royal Veterinary College near London yesterday for his 'interview' before starting on the clinical trial of two different SM drugs. He had a blood test and was poked and prodded and passed with flying colours. So next Sunday we start on the 6 weeks of trial. He will be taking Rimadyl throughout as a baseline pain relief - in case one or other drug doesn't work so well for him. So one week on Rimadyl alone, to get his present drug regime (gabapentin and Zitac) out of his system; then two weeks on Drug A. Another week on Rimadyl alone to get Drug A out of his system, then two weeks on Drug B. For each week I have to give him a mark on a line between 'Leading a normal life' and 'So much pain he should be euthanased'!! The RVC will then tell me which drug seems to work best for him, and he can probably continue to take that one. We won't need to go back to the RVC (thank goodness - it was interesting, but a bit of a drag by train).

Oliver seems a good candidate for the trial, as I'm beginning to think that gabapentin really doesn't work all that well for him; we've recently doubled his dose to the maximum possible, but it hasn't made a great difference - he still gets a lot of headaches (probably fairly mild, but I'd rather he didn't have any!), even though he's never had the intense pain that some SM dogs experience. So I'm hoping the trial will find something better for him.

The researcher for this trial needs more Cavaliers to take part. You don't have to go to the RVC - Cambridge, Clare Rusbridge in London, and Nick Jeffery in the US (Iowa State) are also able to do the 'interview' and oversee the trial. Do think seriously about taking part - the trial could really help the treatment of dogs with SM, and for most of them medication is the only option we've got at the moment. To find out more you can email ckcstrial@gmail.com

Margaret came along with me to find out more about the trial firsthand - and I much appreciated getting a lift from Hatfield station, although I had worked out the buses! It was interesting talking to the main RCV researcher, Johnny Plessas, who had worked with Nick Jeffery in Cambridge. A good piece of information he gave us was that since the earlier trial of pain relief (about 5 years ago) the RVC has been working with a pharmaceutical company and they will be unveiling their product shortly.

So pleased it went well and we really hope that one of these drugs will help Oliver more than his existing meds.

The trial sounds very interesting, wish we were near enough to take part - but I do hope others on the board will be in a position to do so, if it only involves one visit then that makes it more available to people.

It's good to hear that the RVC have been working with a pharmaceutical company and I look forward to hearing more about that.

I applied for the clinical trial a couple of months ago, not because I felt it would benefit my dog in particular but because I believe that all of us with SM dogs should be (and many already are) doing everything possible to help the researchers and to improve treatment for all dogs with SM. Even if it doesn't help Oliver, it will still be worth doing. It's only in the last few weeks that I've been wondering if a different medication would be more effective for Oliver (thinking Lyrica!) - if one of the trial drugs helps him, that will be a splendid bonus, but not the main reason I applied for the trial. The trial is being very careful to ensure that no dog taking part will be harmed in any way, you can withdraw at any time, but you never know, you may be testing something that will really improve your dog's quality of life (and that of many others).

Clinical Trial in UK and USA

Wonderful Kate is really downplaying the effort she made to support this trial. She left home with her two dogs at 10am and did not expect to get back until 8pm.

More candidates for this trial are needed. Please help if you can. The Cavaliers do not have to be Kennel Club registered, so rescue or unregistered pets can take part, but they must have MRI confirmed Chiari-like malformation and/or syringomyelia.

The researchers are obviously not saying what the trial drugs are but Kate was told they are both licenced for humans but not dogs. Despite this they have actually both been used to treat dogs so it is known they are safe to use.

The details are below............

Clinical Trial

Comparison of two different treatment options for the management of neuropathic pain in Cavalier King Charles Spaniel dogs with Chiari-like Malformation/Syringomyelia.

Background Information

Syringomyelia is common neurological condition of Cavalier King Charles Spaniels (CKCS) that is characterised by the development of fluid filled pockets (syringes) within the spinal cord caused by changes in the flow of the fluid in the brain and the spinal cord due to Chiari-like malformation. Syringomyelia is often presented with episodes of facial rubbing, pain, scratching and / or lameness.

Currently, many different drugs have been proposed for Chiari-like malformation and syringomyelia but there is no evidence that any of these drugs is actually helping to improve the symptoms.

Purpose of this Research Trial

The aim of this multicentre study is to determine the best available medical treatment for dogs affected by Chiari-like malformation/Syringomyelia.

Which dogs can be enrolled in the trial?

Only CKCS dogs with MRI confirmed Chiari-like malformation and/ or syringomyelia can be included in the trial. These dogs must show clinical signs of neck/ back pain, air scratching, facial rubbing, screaming/ yelping episodes or wobbliness. Dogs with kidney or gastro-intestinal disease cannot be included.

Are there any side effects associated with these drugs?

No serious side effects have been reported with the use of these drugs which have been used in dogs before and no placebo treatment will be used. Some dogs may experience vomiting, diarrhoea, drowsiness or wobbliness. However, your dog should not participate in the trial if it has history of kidney disease or gastrointestinal disease.

Do I need to pay for anything?

The cost of the treatment can currently be offered free for CKCS participating at the RVC site and the owner of the dog will not pay for any consultations or re-examinations associated with this trial.

Right of refusal to participate and withdrawal

You are free to choose to participate in the study. You may refuse to participate without any loss of benefit. Your dog will receive the same standard care and treatment which is considered best irrespectively of your decision to participate in the study. You may also withdraw at any time from the study.

Confidentiality

The information provided by you will remain confidential. Nobody except the veterinarians involved in the care of your dog will have access to it. Your name and identity will also not be disclosed at any time. However the data may be seen by an Ethical Review Committee and may be published in journal and elsewhere without giving your name or disclosing your identity.

If you want to participate in this trial and hopefully make a difference to dogs suffering from Syringomyelia / Chiari-like malformation, please write an email to ckcstrial@gmail.com or contact one of the centres directly and ask for the person involved in the study.

Sorry you couldn't continue with the trial but you have actually contributed a useful piece of information about a side-effect the researchers obviously weren't expecting. It would be interesting to know whether other dogs are affected as Charlie was, and if there is any reason for it (assuming not all dogs in the trial will get the same side-effect).

It's also reassuring to know that if a dog does get this side effect it can be dealt with simply by stopping the drug, with no lingering after-effects.

We'll see how Oliver gets on! I think one of the puppies recently diagnosed with SM (Elvis?) was put straight into the trial by Clare Rusbridge as a useful way of finding out the best medication for him - could his owner give us an update?